These are technically called “neuropsychiatric” symptoms, but regular people might refer to them as “acting crazy” symptoms. Or even “crazy-making” symptoms, as they do tend to drive family caregivers a bit nuts.

Because these behaviors are difficult and stressful for caregivers — and often for the person with dementia — people often ask if any medications can help.

The short answer is “Maybe.”

The medium-length answer is “Maybe, but there will be side-effects and other significant risks to consider, and we need to first attempt non-drug ways to manage these behaviors.”

In fact, no medication is FDA-approved for the treatment of these types of behaviors in Alzheimer’s disease or other forms of dementia.

But it is VERY common for medications — especially antipsychotics — to be prescribed “off-label” for this purpose.

This is sometimes described as a “chemical restraint” (as opposed to tying people to a chair, which is a “physical restraint”). In many cases, antipsychotics and other tranquilizing medications can certainly calm the behaviors. But they can have significant side-effects and risks, which are often not explained to families.

Worst of all, they are often prescribed prematurely, or in excessive doses, without caregivers and doctors first putting in some time to figure out what is triggering the behavior, and what non-drug approaches might help.

For this reason, in 2013 the American Geriatrics Society made the following recommendation as part of its Choosing Wisely campaign: “Don’t use antipsychotics as first choice to treat behavioral and psychological symptoms of dementia.”

You may now be wondering what should be the first choice. This depends on the situation, but generally, the first choice to treat difficult behaviors is NOT medication. (A possible exception: geriatricians do often consider medication to treat pain or constipation, as these are common triggers for difficult behavior.)

Of course in certain situations, medication should be considered. If your family member has Alzheimer’s or another dementia, I want you to be equipped to work with the doctors on sensible, judicious use of medication to manage difficult behaviors.

In this post, I’ll review the most common types of medications used to treat difficult behaviors in dementia. I’ll also explain the approach that I take with these medications.

5 Types of Medication For Difficult Behaviors in Dementia

Most medications used to treat difficult behaviors fall into one of the following categories:

1.Antipsychotics. These are medications originally developed to treat schizophrenia and other illnesses featuring psychosis symptoms. (For more on psychosis, which is common in late-life, see 6 Causes of Paranoia in Aging & What to Do.)

Commonly used drugs: Antipsychotics often used in older adults include:

Usual effects: Most antipsychotics are sedating, and will calm agitation or aggression through these sedating effects. Antipsychotics may also reduce true psychosis symptoms, such as delusions, hallucinations, or paranoid beliefs, but it’s rare for them to completely correct these in people with dementia.

Risks of use: The risks of antipsychotics are related to how high the dose is, and include:

Increased risk of stroke and of death; this has been estimated as an increased absolute risk of 1-4%

A risk of side-effects known as “extrapyramidal symptoms,” which include stiffness and tremor similar to Parkinson’s disease, as well as a variety of other muscle coordination problems

People with Lewy-body dementia or a history of Parkinsonism may be especially sensitive to antipsychotic side-effects; in such people, quetiapine is considered the safest choice

Evidence of clinical efficacy: Clinical trials often find a small improvement in symptoms. However, this is offset by frequent side-effects. Studies have also repeatedly found that using antipsychotics in older people with dementia is associated with a higher risk of stroke and of death.

2. Benzodiazepines. This is a category of medication that relaxes people fairly quickly. So these drugs are used for anxiety, for panic attacks, for sedation, and to treat insomnia. They can easily become habit-forming.

Commonly used drugs: In older adults these include:

Lorazepam (brand name Ativan)

Temazepam (brand name Restoril)

Diazepam (brand name Valium)

Alprazolam (brand name Xanax)

Clonazepam (brand name Klonopin)

Usual effects: In the brain, benzodiazepines act similarly to alcohol, and they usually cause relaxation and sedation. Benzodiazepines vary in how long they last in the body: alprazolam is considered short-acting whereas diazepam is very long-acting.

Risks of use: A major risk of these medications is that in people of all ages, they can easily cause both physical and psychological dependence. Additional risks that get worse in older adults include:

Increased risk of falls

Paradoxical agitation (some older adults become disinhibited or otherwise become more restless when given these drugs)

In older adults who take benzodiazepines regularly, there is also a risk of worsening dementia symptoms when the drug is reduced or tapered entirely off. This is because people can experience increased anxiety plus discomfort due to physical withdrawal, and this often worsens their thinking and behavior.

Stopping benzodiazepines suddenly can provoke life-threatening withdrawal symptoms, so medical supervision is mandatory when reducing this type of medication. (See How You Can Help Someone Stop Ativan for more information.)

Evidence of clinical efficacy: A recent review of clinical research concluded there is “limited evidence for clinical efficacy.” Although these drugs do have a noticeable effect when they are used, it’s not clear that they overall improve agitation and difficult behaviors in most people. It is also not clear that they work better than antipsychotics, for longer-term management of behavior problems.

3. Mood-stabilizers. These include medications otherwise used for seizures. They generally reduce the “excitability” of brain cells.

Commonly used drugs: Valproic acid (brand name Depakote) is the most commonly used medication of this type, in older adults with dementia. It is available in short- and long-acting formulations.

Usual effects: The effect varies depending on the dose and the individual. It can be sedating.

Risks of use: Valproic acid requires periodic monitoring of blood levels. Even when the blood level is considered within acceptable range, side-effects in older adults are common and include:

Evidence of clinical efficacy: A review of randomized trials of valproate for agitation in dementia found no evidence of clinical efficacy, and described the rate of adverse effects as “unacceptable.” Despite this, some geriatric psychiatrists and other experts feel that valproate works well to improve behavior in certain people with dementia.

4. Anti-depressants. Many of these have anti-anxiety benefits. However, they take weeks or even months to reach their full effect on depression or anxiety symptoms.

Commonly used drugs: Antidepressants often used in older people with dementia include:

Selective serotonin reuptake inhibitor (SSRI) antidepressants:

Citalopram, escitalopram, and sertraline (brand names Celexa, Lexapro, and Zoloft, respectively) are often used

Paroxetine (brand name Paxil) is another often-used SSRI, but as it is much more anticholinergic than the other SSRIs, geriatricians would avoid this medication in a person with dementia

Mirtazapine (brand name Remeron) is an antidepressant that can increase appetite and sometimes increases sleepiness when given at bedtime

Trazodone (brand name Desyrel) is a weak antidepressant that is sedating and is often used at bedtime to help improve sleep

Usual effects: The effects of these medications on agitation is variable. SSRIs may help some individuals, but it usually takes weeks or longer to see an effect. For some people, a sedating antidepressant at bedtime can improve sleep and this may reduce daytime irritability.

Risks of use:The anti-depressants listed above are generally “well-tolerated” by older adults, especially when started at low doses and with slow increases as needed. Risks and side-effects include:

Nausea and gastrointestinal distress, especially when first starting or increasing doses (SSRIs)

SSRIs may be activating in some people, which can worsen agitation or insomnia

Citalopram (in doses higher than 20mg/day) can increase the risk of sudden cardiac arrest due to arrhythmia

An increased risk of falls, especially with the more sedating antidepressants

Evidence of clinical efficacy: A 2014 randomized trial found that citalopram provided a modest improvement in neuropsychiatric symptoms; however the dose used was 30mg/day, which has since been discouraged by the FDA. Otherwise, clinical studies suggest that antidepressants are not very effective for reducing agitation.

5. Dementia drugs. These are the drugs FDA-approved to treat the memory and thinking problems associated with Alzheimer’s disease. In some patients they seem to help with certain neuropsychiatric symptoms. For more on the names of these drugs and how they work, see 4 Medications to Treat Alzheimer’s & Other Dementias.

Practical tips on medications to manage difficult behaviors in dementia

You may be now wondering just how doctors are supposed to manage medications for difficult dementia behaviors.

Here are the key points that I usually share with families:

Before resorting to medication: it’s essential to try to identify what is triggering/worsening the behavior, and it’s important to try non-drug approaches, including exercise.

Be sure to consider treating possible pain or constipation, as these are easily overlooked in people with dementia. Geriatricians often try scheduling acetaminophen 2-3 times daily, since people with dementia may not be able to articulate their pain. We also titrate laxatives to aim for a soft bowel movement every 1-2 days.

No type of medication has been clinically shown to improve behavior for most people with dementia. If you try medication for this purpose, you should be prepared to do some trial-and-error, and it’s essential to carefully monitor how well the medication is working and what side-effects may be happening.

Antipsychotics and benzodiazepines work fairly quickly, but most of the time they are working through sedation and chemical restraint. They tend to cloud thinking further. It is important to use the lowest possible dose of these medications.

Benzodiazepines probably increase fall risk more than antipsychotics do, and are habit forming. They are also less likely to help with hallucinations, delusions, and paranoias. For these reasons, if a faster-acting medication is needed, geriatricians usually prefer antipsychotics to benzodiazepines.

Antidepressants take a while to work, but are generally well-tolerated. Geriatricians often try escitalopram or citalopram in people with dementia.

It is usually worth trying a dementia drug (such as a cholinesterase inhibitor or memantine) if the person is not already on these medications, as these drugs also tend to be well tolerated.

I admit that although studies find that non-drug methods are effective in improving dementia behaviors, it’s often challenging to implement them.

For people with dementia living at home, family caregivers or paid helpers often have limited time and energy to learn and practice behavior management techniques. Despite the risks of antipsychotics, family members are often anxious to get some relief as soon as possible.

As for residential facilities for people with Alzheimer’s and other dementias, they vary in how well their staff are trained in non-drug approaches.

What you can do about medications and difficult dementia behaviors

If your relative with dementia is not yet taking medications for behaviors, consider these tips:

Start keeping a journal and learn to identify triggers of difficult behaviors. You will need to observe the person carefully. Your journaling will come in handy later if you start medications, as this will help you monitor for benefit and side-effects.

Consider the possibility of depression. Consider a trial of escitalopram or a related antidepressant, but realize any effect will take weeks to appear.

If the person is often very agitated, aggressive, or paranoid, or if otherwise the behavioral symptoms are causing significant distress to the older person or to caregivers, it’s often reasonable to try an antipsychotic.

Be sure to discuss the increased risk of stroke and death with the doctor and among family members. This can be a reasonable risk to accept, but it’s essential to be informed before proceeding.

It’s best to start with the lowest dose possible.

If there have been visual hallucinations or other signs of possible Lewy-Body dementia, quetiapine is usually the safest first choice.

For all medications for dementia behaviors:

Monitor carefully for evidence of improvement and for signs of side-effects.

Doses should be increased a little bit at a time.

Especially for antipsychotics, the goal is to find the minimum necessary dose to keep behavior manageable.

If your relative with dementia is currently taking medications for behaviors, then you will have to consider at least the following two issues.

One is whether the behavior issues currently seem manageable or not. If behavior is still often very difficult, then it’s important to look into triggers and other behavioral management approaches.

Ongoing agitation or difficult behaviors may also be a sign that the medication isn’t effective for your relative. So it may also be reasonable to consider a change in medication. The best is to work closely with a doctor AND a dementia behavior expert; some social workers and geriatric care managers are very good with dementia behaviors.

The other issue is to make sure you are aware of any risks or side-effects that the current medications may be causing.

The main side-effects I see people with dementia experience are excess drowsiness, excess confusion, and falls. These are usually due to high doses of antipsychotics and/or benzodiazepines. In such cases, it’s often possible to at least reduce the dosages somewhat. Addressing any other anticholinergic or brain-dampening medications can also help.

Now should you aim to get your relative completely off antipsychotics, in order to reduce mortality risk, improve alertness and thinking, and to reduce fall risk?

I have found that sometimes tapering people completely off antipsychotics is possible, but it can be a labor-intensive process. Furthermore, studies find that a certain number of people with dementia “relapse” after antipsychotics have been discontinued. Another very interesting 2016 study of antipsychotic review in nursing homes found that stopping antipsychotics tended to make behavior worse unless the nursing home also implemented “social interventions.”

In other words, attempting to completely stop antipsychotic medications involves effort, may be followed by worse behavior, and is less likely to succeed if you cannot concurrently provide an increase in beneficial social contact or exercise. It is certainly worth considering, but in people who are taking more than the starter dose of antipsychotic, it can be challenging.

No easy solutions but improvement IS usually possible

As many of you know, behavior problems are difficult in dementia in large part because there is usually no easy way to fix them.

Many — probably too many — older adults with Alzheimer’s and other dementias are being medicated for their behavior problems.

If your family is struggling with behavior problems, I know that reading this article will not quickly solve them.

But I hope this information will enable you to make more informed decisions. This way you’ll help ensure that any medications are used thoughtfully, in the lowest doses necessary, and in combination with non-drug dementia behavior management approaches.

And if you are looking for a memory care facility, try to find out how many of their residents are being medicated for behavior. For people with Alzheimer’s and other dementias, it’s best to be cared for by people who don’t turn first to chemical restraints such as antipsychotics and benzodiazepines.

Comments

Excellent article, Dr. Kernisan. Thank you for sharing your wisdom on medications used to treat behavioural challenges in dementia. I like how you emphasize medications should not be the first line of defense. I see medications being prescribed too quickly, especially in nursing homes. They have their place, but only as a last resort. Assessing for delirium and depression are also important factors. Thanks again.

Very interesting article with also finite suggestions; I am currently writing a book for Consulfant Pharmacists in LTCFs on the top 10 disease states with Alz Dis. as the first chapter. Thank you for a few suggestions especially on Paxil. Never thought much of that drug except in PTSD. So Brava to you for your insights. Jim Dickerson Rp,PharmD, Gretna,Ne

Glad you found this helpful. Yes, in the US, Paxil is unpopular with geriatricians, we feel that citalopram and sertraline have more favorable side-effect profiles in vulnerable older adults.

Of course as you know, the ideal is to treat problems without medication whenever possible, but such non-drug methods often require time, effort, and some training of family and long-term care providers.

My father was on the majority of these medications. My mother had called 911 three times because of his anger and violence. We were fortunate that a psychologist, dealing in geriatric patients only, saw him the jjthird time. He was a godsend. It took about a year to find the right medications and strength to stabilize him. We had no idea he had dementia. About a year prior he had a severe backwards fall on the stairs leading to the front door. He landed head first against the front door. How he came back from that I don’t know. He was put in a coma for 2 weeks afterwards. We assumed his violent behaviour was due to brain damage from the fall. Also, my dad had always been an angry, agitated and violent person. His anxiety and depression had gone untreated for years. Prior to his dementia he had calmed down quite a bit. His anger from dementia was 24/7, it never went away and you had to be on guard all the time. Anyways, yes, the drugs had a dramatic effect on his personality. He became someone I no longer recognized. And over the 10 years he suffered with dementia my mother worked with his doctor, increasing and decreasing the mg on these medications when she felt something was wrong. I can’t imagine how long he would have lived without these meds.

Thanks for sharing your story. I’m so glad your family was able to find a health provider with the right expertise to work closely with you and help you. It does often take some trial and error and also adjusting as the person’s brain changes over time.

I have been working with care facility and doctor to reduce list of meds-is off morphine and sertraline with an astonishing change in alertness and understanding. however, there is now an increase in belligerent behavior, and suspicion. not sure if this will change, or it will be necessary to medicate again. hard to tell if he is just being himself, or if he has a real problem!!!!!

Well, it sounds like reducing those medications has improved the overall activity in his brain, so he is more alert. Usually an opiate like morphine is more sedating than a medication like sertraline, which isn’t very sedating for most people.

Suspiciousness is quite common in dementia, especially if a person is feeling anxious or if the environment doesn’t feel reassuring and familiar.

Belligerence is also common. It’s important to check and see if some kind of uncomfortable symptom might be causing it. Presumably the morphine was to treat pain. Does he still need some kind of treatment for pain? I find that some of my dementia patients are more agreeable once we start a very small dose of opiate, or some other effective medication for pain. Or are there other things going on that might be putting him ill at ease and triggering irritability?

You basically need to explore the situation a bit, and then also give things a little time. Hopefully things will become clearer as you go through your process of trial-and-error. Good luck!

Very good article.
Mom was a very Profound behavior disruptions Alzherman’s client. Very hyper, insomnia, strip herself in public area non stop… Just wear me off. ..
She was on Depakote, but sooner noted stiffness on her neck and difficulty walking… have to stop.
Dr. just start on Seroquel …
At night if give PRN Temazepam plus ativan she may sleep 4-5 hrs, then restart all bizarre activities again. Sleepy at day.
Do you think Lithium and ECT will be better for her or not ?? Is ahe need go to senior Mental Hospital for eval?
The only good thing for her is she compliance w/ the medication and cooperate w/ behavior correction ( but Just in 10 min, she will repeat again).
Long memory are good , and no short memory

Lithium is sometimes used to treat bipolar disorder in older adults but it’s not a treatment for difficult behaviors associated with Alzheimer’s or related dementias. Electroconvulsive therapy is a treatment for very serious depression, not for dementia.

Temazepam and lorazepam (brand name Ativan) are both benzodiazepines, we try to avoid using them in geriatrics and we generally don’t give two drugs in the same class.

Generally if you are struggling then it’s a good idea to get an evaluation and then tailored advice on how to manage. She may improve with certain behavioral techniques. good luck!

My mother’s GP put her on citalopram and I don’t see it working for her-in fact I think it has made her worse. When I expressed that to the doctor, he pretty much dismissed me and said that wasn’t the problem. We aren’t going back to him.

Aloha and thank you for this article. I cared for my Mom with Alzheimer’s for many years in the home. The disease led to a disinhibited hyper-sexual response that was very difficult to manage, but very well treated by Zoloft. I thought it was ironic that the same “negative side effect” of this drug (sexual disarousal) resulted in a very effective “off-label” application. Can you disseminate this? Thank you!

Oh, that is indeed very interesting, thank you for sharing this story. Alzheimer’s does often cause disinhibition and some people do become sexually in appropriate. I’m not sure it had ever occurred to me to try an SSRI for that specific purpose, but you are right, it makes sense given that decreased libido is a common side-effect. I will have to ask my geriatric psychiatry colleagues about this next time I see them. Thank you!

My mother had been prescribed Valproic acid for late middle stage Alzheimers. Lately, she has has become aggressive and very agitated without provocation. Just seeing herself in the mirror elicits an argument with herself, not to mention family members.
The clinic refuses to give my dad even small occasional doses of benzodiazepenes, citing the debunked study of causing the disease to speed up. What bothers me is that they are not even testing her blood as needed for the current drug, and they are willing to give her haldol – even though she is experiencing difficulty using her hands now! It’s ok to have difficulty in movement (falls?) or tardive dyskensia of course. Is the fact that it is a controlled drug playing a small part in this? My poor dad can’t leave the house with her, and I feel as if they should be transparent in why their hands are tied. She’s not going to get better and my dad needs to live out his life at least in peace. He does’t want to institutionalize her, but the medical community is worthless.

This sounds like a difficult situation. It’s unfortunate if you feel the involved clinicians aren’t communicating with you well enough.

I have to say that most of us in geriatrics are very reluctant to prescribe benzodiazepines for people with dementia and difficult behaviors. After trying non-drug methods to address agitation, I do usually try a low-dose antipsychotic. Movement difficulties due to antipsychotics can happen, but that’s usually at higher doses. Of course, I cannot say is this would be a reasonable approach for your mother, especially given you report some difficulty with her using her hands.

It is also true that benzodiazepines may be perceived as having more “street value” and so some clinicians worry about them being used or diverted by someone else in the household. They are also more complicated to prescribe since they are a controlled substance.

I would encourage you to keep trying to discuss your concerns with the clinicians. Emphasize that your father really needs help. Consider a trial of what your mother’s doctors recommend, and see how she does. If it doesn’t provide enough help, work with the clinicians on trying something else. If the communication continues to be unsatisfactory, then your family might want to consider getting a second opinion. Good luck!

My grandmother has been suffering from dementia for a little while. We want to make sure she is healthy and happy, so we’re looking at different treatment options. I never realized keeping a journal can help family members understand what triggers different behaviors. I’ll be sure to discuss this info with my family.

My dad, who has advanced dementia, was put on 750mg of depakote to deal with his sexually inappropriate behavior. Several months later, he developed almost all the side-effects you describe–vomiting, some hand tremors, difficulties walking, even more confused thinking. Of course the powers that be are saying this is the dementia worsening–and it could be–but I am livid that no one ever discussed such side effects with me. At my insistence, they’re lowered the dose to 375mg a day–but not much change so far, after 3 weeks. Think there could be?

Parkinsons-like symptoms (which include tremors and stiffness, and sometimes difficulty walking) are known to develop in some people who take depakote. Often these symptoms resolve when the drug is discontinued, but apparently it can take weeks, and occasionally, the problems persist.

It’s too bad if you weren’t notified of potential side-effects but also not that surprising…most drugs have a long list of “not so likely but not vanishingly rare” side-effects, and doctors often feel it’s not feasible to discuss all these possibilities with patients and families. In truth, I think it’s a bigger problem that usually families aren’t informed that there isn’t much research supporting the use of many of these medications.

You should certainly discuss your depakote concerns with your father’s doctors. It may be reasonable to further taper down his depakote and see how he is, both in terms of inappropriate behavior and in terms of the other symptoms you are concerned about. Good luck, I hope you find a better solution for your father.

My wife was diagnosed with PPA at the age of 50 we believe and have been told that it has progressed to Alzheimer’s. She was agitated the first day and within 8 hrs was sent to a behavior facility and put on all these med’s that your talking about. Please help I beg you

I am sorry to hear of your wife’s decline and even more sorry to hear that the facility started medication for agitation so quickly.

Unfortunately, all I can do is offer a little information and encouragement. If you’re concerned about your wife, you will need to ask a lot of questions and otherwise advocate for her. Those medications must have been prescribed by a clinician. You can ask to speak to the clinician, and express your desire for your wife to be on the minimum medication possible, or medicated only as a last resort. You can also complain about the medication to the facility, and ask the nursing director to explain to you what non-drug interventions they tried, or what they are planning to do in order to avoid medicating your wife indefinitely.

You may find it helpful to connect with other Alzheimer’s caregivers through a support group, either online or in person. Many people are in your situation, and will have encouragement and practical advice to share.

My has become very violent with staff and residents. He was transferred from his memory care unit to a behavioral health unit in a hospital. He is on .5 mg Ativan 4x/day, .5mg Haldol 4x/day and 1 tablet (?mg) of Norco as needed for pain in his back. He is still exhibiting aggressive behaviors after 5 days. I am getting mixed messages from nurses and doctors. Some feel it is too soon to determine whether the aggression can be controlled and others think there’s no hope. No other drugs have been tried and doses have not been altered. What should I be expecting? Is it too soon to know where this may lead? Should they be trying other medications?

When aggression comes on fairly quickly (e.g. over hours to days), we normally search for anything that might trigger pain, discomfort, or delirium. So we would check and make sure he didn’t seem to be hurting somewhere, didn’t have constipation, and then we would also check for other delirium triggers such as infection, electrolyte imbalance, dehydration, medication side-effect, etc.

One tablet of Norco per day would not be enough to manage an ongoing pain problem, such as a new painful fracture in one’s vertebrae. (But if he’s on pain meds, you also want to make sure he’s not getting constipated from them.)

A violent person often does require at least temporary chemical restraint, for the safety of everyone else. We don’t usually use benzodiazepines as they can disinhibit older adults and cause paradoxically worse agitation; it is often possible to manage an aggressive episode just with antipsychotics. Chemical restraint scheduled for 4x/day seems like a lot, we would usually schedule at most 1-2 times per day and otherwise use as needed doses, because the goal should be to control the behavior with the minimum amount of medication necessary.

So…you might want to ask them questions about why they feel both the ativan and haldol are necessary. You could tell them you’ve read that Ativan can agitate older people with dementia and ask if they might consider using just an antipsychotic, if chemical restraint remains necessary.

And I would certainly encourage you to make sure they investigate what brought this on. Hopefully the situation is temporary and he will improve soon. Good luck!

Hello. My husband was diagnosed at age 52 with early onset of dementia. He is 55 now and is becoming agitated, negative, over sexual and now the biggest issue is paranoia. He has been taking 5 mg of Aricept twice a day and 5 mg of memantine twice a day. My son and I are overwhelmed with his behavior. What do we do about the paranoia? I don’t know if he is in mindset or what now.

For significant paranoia or problematic delusions, we sometimes try a low dose of antipsychotic. As noted in the article, there are a lot of downsides to using these drugs. But if the paranoia and delusions are causing significant distress for the person with dementia or for family, then the benefits may outweigh the risks.

Before starting an antipsychotic, please see my recommendations under the section “If your relative with dementia is not yet taking medications for behaviors.” You want to be sure you’ve tried non-drug approaches before resorting to antipsychotics.

In an earlier comment, a reader mentioned that her husband’s hypersexuality responded well to sertraline (brand name Zoloft), which is an SSRI-type antidepressant. You may want to ask your husband’s doctors about trying an SSRI for this purpose. (It might also help with his mood and other symptoms.)

I am sorry to hear that your husband has developed dementia at such a young age. Usually, people like him are evaluated in memory clinics, and many such clinics have social workers and additional support services available. The medical specialists there may have additional ideas that are likely to work in someone of his age, and with his particular type of dementia. Good luck!

Hi,
Thanks for this site – so much useful info! Are there any good – unobtrusive – GPS devices which can be used to track wandering elderly? My father has dementia, still fairly functional, but now gets lost or confused when out in public – going to bathroom, at grocery store if he gets separated even for a moment. I was thinking the Find My iPhone app, or can a fitbit be used? I’m hoping to find something easy for my mom to use, and something that seems normal and doesn’t make him feel like a naughty child. Is there a good information site you’d recommend? A quick google search turns up lots of devices, but could use a trusted resource for info.

He does see his doc next week, and she will check med levels to see if anything needs tweaking.

Good question. I am hoping to research this issue in greater depth, but not sure when I’ll be able to do so.

Some of the Fitbit models do have built-in GPS, but I’m not sure whether this would enable family to track a person.

There are some GPS tracking devices designed for people with dementia, which can go on the wrist or around the neck. The challenge is getting an older person to wear them. Some of the wrist devices are designed to be hard to remove.

There are also GPS insoles (“SmartSoles”) which are less likely to be noticed by the person with dementia, however they are expensive and need to be recharged every few days.

Like you, I am still looking for the trusted resource on this topic! Perhaps we can update each other as we find them. In the meantime, you could try one of the devices available on Amazon…if nothing else, the return policy is usually more generous than other sites, plus there are often reviews from other real users.

Last but not least, if you are considering GPS tracking, I recommend taking a moment to review the Alzheimer’s Association two page statement addressing the risks and benefits, as well as the ethical issues:Electronic Tracking (Alzheimer’s Association)

I bought a child’s Gizmo from verizon for my husband. I can track him on my phone Also with the push of one button he can call me. I can call him and even if he doesn’t press the button to answer it will automatically connect. The monthly cost is minimal and just added to my verizon bill.

I use GreatCall for my dad. I have his cell phone and now have a neck devise . This works great. I have app on my phone and also can move with him to his cottage . My brothers can also see where he is if I give them permission. Weekly updates and fall alerts. I also use medminder medicine box. It lights up only when time is correct to take medicine and will alert me via text or phone calll or both of my dad does not take the Meds with in the time period I set up . Very helpful

Thank you for this helpful article. I think I have some helpful information to ask my husband’s Doctor on Monday. My husband is in late stages and I need help with his medications desperately. It’s hard to know what causes his behaviors the meds or this horrible disease. Again thank you.

Are there any patches or other forms of severe behavior medications for dementia in a resident who will not eat or drink? Therefore pills cannot be crushed, given in liquid or given whole because she spits everything out. She will eat a muffin at times when her spouse feeds her. Thank you.

I know that Exelon (rivastigmine) is available as a patch; not sure about the other medications. I would recommend asking a pharmacist to help you identify other medications that may be available in patch form.

Crushed or liquid medications are also sometimes served mixed with applesauce or pudding.

Aromatherapy is not a behavior medication per se, but some studies have found that aromatherapy massages improve behavior. As I mention in the article, it’s important to explore non-drug methods of helping people with dementia feel better, and of managing difficult behaviors. Good luck!

I’m a hospice and palliative nurse and have seen compounded meds from a compounding pharmacy of Ativan and haldol made into a topical gel to place on the skin and it worked wonders for scary hallucinations , paranoia, and hyper sexual ideas. We had the staff put between shoulder blades so the patient couldn’t wipe it off. We even discharged the 90 something patient from hospice since she was doing so well. A real success story.

Interesting. I’m not familiar with this type of topical application, but it is indeed very common for hospice providers to use both Haldol (an antipsychotic) and Ativan (a benzodiazepine tranquilizer) to treat agitation or restlessness.

Still, I’ve seen older patients get better and “graduate” from hospice; many of them benefit from multi-disciplinary care, comprehensive attention to their symptoms, and perhaps even discontinuation of other medical care. Nice that things worked out well for your patient.

Thank you for such an informative forum. I was wondering, of the chemical restraints are any commonly known to disrupt thermoregulation?

My brother was diagnosed with M.S. as a 12 year old, is now 51 and has slight behavioral alterations. He has been living in a care facility for the past 6 years and overall has been cordial, compliant and manageable. Over the past 8 months he’s been refusing to eat, drink or take his medication. He’s been making statements such as,”This isn’t my medication” and “I’m not suppose to be talking to you.” and “I know you’re not real, you’re just pretending to be real.”

He’s been in and out of the ER over 10 times now for his body temperature dropping to 91 degrees. Everytime before a trip to the ER, our family has noted severe cognitive loss and confusion. Between the severe changes in his personality coupled with thermoregulation issues I’m concerned about either accidental overdose or intentional medicinal abuse in his care facility. Is there a way to request a toxicology the next time he’s admitted into the ER? From my understanding, only items such as alcohol, marijuana, heroine, etc are evaluated in a standard toxicology but I’m wondering about drugs such as ativan or risperdal, etc.

I realize it’s a sensitive issue and don’t mean to insult anyone. Caretakers of these difficult patients are amazing for what they do. Then again, some of them are burnt out and need to change jobs. It would put my mind at ease knowing he was tested (with negative results) so we could move forward exploring a neurological explanation.

If you suspect his hypothermia episodes are related to drug exposure, you may want to start by asking to review his “Medication Administration Record” (MAR). Residential facilities are usually required to maintain records of every time they administer a drug to a person. Your brother’s guardian or durable power of attorney for healthcare should be able to request this information. It would be extremely unusual (and highly illegal) for someone to be giving him medication and not document it.

You could also try asking the ED doctors; they should be able to tell you what kind of specialized toxicology might be available. Understanding your concerns might also help them figure out what is happening to him during these episodes. Good luck!

I really appreciate the content of this article. My 93 yr old mom has dementia (most likely Alzheimer’s type). Now in the later stages, she is exhibiting an overwhelming fear when toiletted on the commode/toilet. With her slowed cognitive processing, it is necessary to give her visual and verbal cues before attempting to help her pull down her depends to toilet. She screams out in fear because of misinterpreting what is happening to her. It is heartbreaking to watch her in such distress every 2 hours to toilet; and it is heartbreaking for her caregivers who are trying to help her. Any recommendations are welcomed. Are meds appropriate?

There’s not really a good medication for handling this. You probably can find a doctor willing to prescribe a sedative or tranquilizer, such as lorazepam (brand name Ativan), but this will further cloud her thinking, will make her balance worse, and could even paradoxically agitate her.

So it would be much much better to find a different way of handling the solution. The best would be to learn more on non-drug dementia behavior management. My former Caring.com colleague Paula Spencer Scott has researched this extensively for her book Surviving Alzheimers, which is a great resource for families, and here’s what she suggests:

“The behavioral approaches I know of would be to first try to assess the cause(s) for her distress: Is it pain? (So, UTI or constipation possible? Is she eating/drinking enough, could a medication be causing the problem?) Or are perceptual changes causing a fear of the water (common) or of falling as she tries to sit, or of falling in?
Worth considering: When does the distress begin? When they start to lead her to the toilet, once she’s in the room trying to sit, or after she’s seated? Could assists like a higher seat or frame around the commode help ease anxiety of falling as she sits? What might be happening when this older person is “misinterpreting”? Could it also be an anxiety about privacy?
It’s also possible that now a negative association has been set up with whoever is leading her to the bathroom, and the whole business is an unpleasant experience for her. That might warrant a whole different approach –not, “time to use the toilet” but sort of cajoling her along and just happening to be there, inviting her to sit, etc. which can be a very time intensive process; if the caregiver is stressed or rushing or tense about it, she’ll pick up on that. Might warrant an entirely different person and approach to doing this, which isn’t always feasible.”

Probably the most effective way to get help is to get a consultation with a dementia behavior expert for some specific trouble-shooting suggestions. The ideal would be someone who could observe the situation with your mom and model a different approach for the caregivers, but a Skype or phone consult could also be useful. Teepa Snow is one of the best-known experts on the compassionate person-centered care of people with dementia; consider looking for a local professional who has been certified in Teepa Snow’s method, or in something similar. (You can find a list of independent consultants certified in her method here.)

If you can’t find a consultant or if cost is an issue, try to find an educational event in your area, on personal care of people with dementia. They are sometimes offered by non-profits, by memory centers, or even by memory care facilities.

Last but not least, consider whether it’s absolutely necessary to use the commode for toileting, and whether it’s necessary to use it every two hours. If it’s creating this much distress or effort to manage, you might find that the burdens outweigh the benefits of this type of timed toileting. There are ways to manage toileting without ever sitting an older person on a toilet or commode, and although they have some downsides, it might be worth it to spare your mom the distress she’s currently experiencing, esp if you aren’t able to get someone to help you make the toileting more bearable for her.

hello,
My mother had LBD its been gong on for years. i have noticed that her apetite has increased dramatically from being dicreased. She takes 50mgr seroquel each night and is a small person weighs 36 kilos. she has night sleeping disorders. im wondering if after 5 years on this drug if it is necessary and if it actually does anything. she still gets ideas stuck in her head and scenarios that didnt happen. and is no longer interested or can’t follow a film but keeps herself moving wanting to bath and dress and chattering all the time without noticing if anyone is there.

50mg of seroquel sounds like a pretty sizeable dose for a woman her size. It is hard to say what it is doing for her now; it might be helping her sleep at night, but it’s possible that she could sleep as well or nearly as well on a smaller dose. You could certainly talk to her doctors and ask if it might be possible to try reducing her dose, and seeing how she does. You could also ask about trying melatonin to manage any sleep disorders.

Antipsychotics do increase fall risk and can leave people less alert than they otherwise would be. So it’s generally reasonable to attempt tapering them down at least a bit. Good luck!

Wow this is awesome! My mommy is 65 and was diagnosed with early dementia over ten years ago. She is now living with my family. Im having issues with her and her pain meds. She often request them seems to be every hour. I find myself saying its not time yet or I just gave it to you. She becomes angry and difficult when I tell her the time igave her the pain meds. She insist that i allow her to take her own meds how she wants them. I tell her that I cant do that because she forgets that she has taken them and over medicates. Its veey obvious that she has an dependency on the oxycodone 30mg pills. And being and ex addict does not help the matter. She accuses me of taking her meds or wanting control over her. She is belligerent and down right mean. Her doctors advised me that she is not competent to take care of herself or others(3grands she adopted). But I have no poa or conservatorship over her or them. Help what do i do?

Yikes, that does indeed sound tough. Especially with her dementia, I can imagine it might be hard to get her to cooperate with non-drug methods of managing pain and a program to slowly reduce her dependency on these medications.

One approach that sometimes helps, in such situations, is to switch the pain medication to something longer-acting and harder to abuse. For instance, opiate painkillers are available as a patch; a fentanyl patch is changed every 72 hours. Methadone is another medication that is quite long acting, but is taken as a pill or a liquid, once daily usually.

You might also be able to help her feel better — which could improve behavior — by treating pain with non-opiate medications, such as lidocaine patches or over-the-counter creams. Often people want to feel like “something” is being done, and those approaches are safer than continuing or increasing high doses of opiates.

In terms of capacity and competence: if her doctors think she can’t care for herself or her affairs, and you don’t have a durable power of attorney, then in most states you will need to consider requesting guardianship/conservatorship through the court system. Elderlaw attorneys can help with this, but if money is an issue, then definitely start by checking with your local Area Agency on Aging and also consider reporting her to Adult Protective Services (APS); APS can sometimes initiate conservatorship proceedings.

Good luck and don’t forget to take care of yourself; this sounds stressful and you may be in this situation for quite a while yet. There is an active online support group for caregivers at AgingCare.com; that might be a good place to get moral support and ideas for how to proceed.

i am currently taking care of my mother in law. i believe she has dementia. she is 88 yrs old and cannot walh properly anymore. she needs help with everything but that is ok because it is our duty to care for the in their old age. her behaviour is getting increasingly irrational each day and a lot of times she cries for help and say inappropriate words. at night it is worse. only in the wee hours of the morning when she is exausted does she sop and sleep for hours then it starts again. my wife and i have tried various methods using psychology as we know it but it doesn work. please comment . its been a long time since we had a good night sleep.

Sorry to hear of this situation. It is not uncommon but it is certainly very difficult.

If she has memory and thinking problems and behaves irrationally during the day, I would encourage you to learn more about how to manage dementia behaviors. This can reduce your stress and might help your mother in law feel better. There are a number of books available on managing dementia behaviors. You could try Surviving Alzheimer’s, by Paula Spencer Scott; it has lots of good reviews. (She is a former colleague of mine.)

Basically you want to try to address any pain or other discomfort your mother might be in. You should also try to regularize her day time schedule, and make sure she gets exposed to sunshine, fresh air, and exercise if possible. I cover medication options in the article; most are quite risky for older people with memory problems, but there are a few safer options you can try.

Research has found that it’s possible to improve the sleep of people with dementia, but it usually takes a comprehensive multi-pronged approach. So, no quick fixes are usually possible, but it should be possible to improve the situation. Good luck!

My dad was diagnosed with Alzheimer’s disease about 3 years back. He was easily agitated when he couldn’t remember or perform daily task. He was suspicious of my mom and always accused her for stealing his money. Doctor gave him Memantine and 25mgr seroquel. But we found that he couldn’t intellect well, couldn’t perform daily task, couldn’t process or interpret what we talked to him and sometimes get agitated (his face will turn very red when his behavior started). Should we stop giving him the Seroquel as I read somewhere that this drug is not good for elderly with Alzheimer’s which will worsen his intellectual function?

Quetiapine (brand name seroquel) and other antipsychotics are somewhat sedating and so in many cases are reducing difficult behavior just by chemically restraining the person. So they should really be used as a last resort, usually if an older person is so paranoid or agitated that they are posing a real danger to themselves or to family.

As I explain in the article, there are a variety of non-drug ways to help people with dementia cope with frustration or other issues that might be distressing them. If you haven’t already done so, I would recommend reading the linked article on tips for Alzheimer’s Caregivers. I also like the book Surviving Alzheimer’s, which offers lots of practical suggestions for families.

Although remaining on antipsychotics is risky, you should be careful about stopping or reducing them. Behavior often gets worse unless a family or care team has put some effort into otherwise supporting the person by responding in a thoughtful manner to their needs. It can also help to provide the person with dementia with additional exercise and enjoyable social activities.

Do bring up your concerns with your father’s doctors. I hope they will be helpful to you. Good luck!

My mother was just put in nursing facility because of her declining dementia and combative behavior. My sister who is her caregiver has not been able to touch bases with the facilities physician. She wants to know why she is on Klonipin. Do they usually give Klonipin to dementia patients. This physician will not return calls.

I would say it’s not uncommon for people with dementia to be prescribed a benzodiazepine such as Klonopin. However, as I explain in the article, this is probably not the best way to approach agitation, since benzos often cause side-effects, increase fall risk, and have not been proven to be effective.

They do tend to sedate and settle many — but not all — older adults, but there are better ways to manage agitation and using tranquilizers should be a very last resort.

Also, Klonopin (generic name clonazepam) is very long-acting; for an agitation episode, it is more common to prescribe lorazepam (brand name Ativan), which doesn’t last as long.

I would encourage your family to keep up your efforts to contact the prescribing clinician. You should also be able to bring your concerns to the administration of the facility. Find out who the leaders/supervisors are, ask to speak to them, and put your concerns in writing (this creates a paper trail).

I have been trying to get some help and answers on what I can do for my mom who is 80 years old and is suffering from fear/scared at night. I think her fear is about someone breaking into the house and such. I have been searching Google for some answers and I found your wonderful article tonight.

Mom’s Neurologist say she does not have Dementia, but does suffer from short term memory loss from a bad fall that would have happened one year ago next month. She had a brain bleed and was in ICU for four days and the bleed ended up clearing up.

Mom had this nervous/fear problem before the fall and was on 20mg Paxil twice a day and 1mg Ativan three times a day. After the fall and hospital stay the fear problem was gone and she was no longer on the Ativan. However the problem returned shorty after and the doctor changed her meds to one 37.5mg Paxil CR and instead of Ativan she was given 0.50 Xanax up to three times a day. Usually taking just two 0.50 (1mg total) Xanax before bed.

Mom’s problem got worse at the end of last year and her Neurologist added 5mg Buspar three times a day to the Paxil and Xanax she was already taking. She improved for several weeks after the medication finally took effect.

Now for the last four weeks or so the problem is back full force. I don’t know what to do? I have spoke to her GP, Neurologist and Heart Doctors about the problem, but they have not offered any solutions, but one of doctors said to give an additional 0.50 Xanax which would be up to 2mg’s total per day.

I wonder if trying a different kind SSRI medication other than Paxil would work better or is that something that should or should not be tried? If so, what would be a good one to try that might work better?

I also wondered about increasing the Buspar to see if that would help, but then I read about Serotonin Syndrome and how that can be dangerous. I was trying to find out what amount of Buspar would be safe to take with Paxil to avoid serotonin syndrome, but have not been able to find the answer.

Mom otherwise is fine mentally other than the short term memory loss as she reads the paper everyday, does Facebook on her tablet to talk with friends from church, watches the news and tv shows and etc. However, she has had three small strokes (believe they are called TIA’s) over the last 4 or so years and the first one made mom unsteady on her feet, so that is the reason for the fall. She also has a pacemaker.

My mom is so precious and loving and it breaks my heart to see her suffer from something I hope is treatable.

If you have any suggestions on medication or combination of medications that I could mention to her doctors that would be so wonderful!!

Sorry to hear of these issues affecting your mother, I can certainly see why you’re concerned.

It’s not uncommon for people of her age to have fears or even false beliefs, as I explain in the linked article on common causes of paranoia.

Unfortunately, it’s not possible for me to make recommendations regarding her medications. How to treat her depends on what her doctors think is causing this problem. It’s also ideal to try to manage fears and paranoias with non-drug approaches when possible. Last but not least, in geriatrics it would be unusual to use Paxil because it is anticholinergic, and we would normally be very reluctant to control symptoms with a benzodiazepine such as Xanax or Ativan, because the risks usually outweigh the benefits in older adults who have any issues with falls or cognition.

Especially since she has now been taking several medications for quite some time, my recommendation would be that you look for a geriatric psychiatrist to assess her and assist you. People develop physical and psychological dependence on benzodiazepines quite quickly, and then it’s not so easy to reduce them. A psychiatrist would be best qualified to help you, especially one with special experience or qualifications in helping older adults with a history of cognitive impairment.

While you are working on getting help from a suitably qualified clinician, do try to be as reassuring as possible for your mom. Don’t try to talk her out of her fears, that just tends to make older adults even more anxious and stressed. Instead, look for resources that can teach you how to respond constructively, such as the book Surviving Alzheimer’s (even if she doesn’t have a diagnosis or doesn’t have dementia, the strategies will help). I also describe a few approaches in this article: 4 Things to Try When Your Aging Parent Seems Irrational.

Hi
My mother is in hospital at the moment and we are testing for possible dementia. Both of her parents had it but she is only 64 years old.
Myself and my brothers are taking turns to stay with her 24/7. We have noticed that anxiety makes any memory issues a lot worse. When she’s calm and relaxed she remembers a lot more.
I am here with her at the moment and just took her for a shower. The shower seems to be a major trigger and she’s almost in tears and shaking while I shower her. I try to be very delicate and not let the water fall on her head.
I really want to help her improve but not sure how to tackle this shower issue.
Any advise would be greatly appreciated.
Many Thanks

Yes, it’s definitely true that memory and other cognitive functions can get worse when a person is anxious.

Being tested for dementia during hospitalization can be problematic. The main issue is that older adults often develop some delirium during hospitalization, which makes their thinking worse than it otherwise would be. It is best to test someone for dementia when they are rested and in their usual state of health.

My husband aged 84 has moderately severe vascular dementia. I am his carer – age 77 – and responsible for dolling out medication. He is a very complicated case, because he suffers from peripheral neuropathy due to pesticide poisoning, arrhythmia, anaemia probably caused by the osteo-sarcoma of the knee. He already had 2 prosthetic joints in both knees. The anaemia caused some brain disfunction before the cancer was diagnosed, but the disfunction got very much worse after a 5 hour operation to remove the tumour on his knee and replace the joint. Unfortunately this was only partially successful as the cancer metastasised and regrew in the joint, but so far has apparently not spread into the body, and he is having radiotherapy to hopefully reduce the tumour and decrease any pain (not a cure obviously). He is in a wheelchair most of the time. He is ‘hospitalized’ at home and I get a nurse coming in once a day to give an injection of Innohep and a nursing aid twice a day to shower and dress/undress.
My main problem is trying to get the level of Haldol medication right to control psychotic behaviour without totally knocking him out. Also, I do not know whether any of the other medicines need adjusting. His original medicines were prescribed by the geriatric hospital in Montpellier, who have a lot of experience in the field. He is on 5mg Bisoprolol for the heart, 20mg of Seresta (Oxazepam) for anxiety spread through day, 10mg Mianserine for depression – morning, 320mg Serenoa repens and 3gm Paracetomol. The dosage of Haldol is between 25 – 30 drops ( 2 and a half -3mg) three times a day which I give with the paracetomol, as he can be very suspicious that I may be poisoning him. He has also on rare occasions been violent to me when the Haldol wears off, so I have to be careful. It’s very variable. Have you any comments please? I found your article and web site very helpful. Sorry this is so long-winded!

Hm. That is a lot of medication that he is on. It’s not really possible for me to make specific suggestions as to how his medications should be dosed.

I will say that it’s a fair dose of Haldol and he is also on the benzodiazepine oxazepam. As I explain in the article, these are considered risky medications and therefore our goal is to use the absolute minimum necessary to control behavior. Also oxazepam is considered short-acting, and the problem with such medications is that they wear off and people almost start experiencing withdrawal; this is less of an issue with longer acting medications.

If paranoia or aggression is an issue, I would encourage you to also seek help from a dementia behavior specialist. There may be non-drug ways to help him feel better and act out less, and to redirect his behavior when he does act out. This would overall be safer for him. Good luck and take care.

Thanks for your comments. I should also have mentioned that he is chemically sensitive after the pesticide poisoning, so should probably be on the lowest dose possible of anything. I may be wrong, but I’ve always French doctors can be a bit quick to medicate, but he was in a parlous state when he was an inpatient at the geriatric hospital. at one point he had to be referred to another hospital with a suspected perforated bowel, which turned out to be an abscess on the bowel which was drained. Reading what you have said about infections making the dementia worse , this explains a lot.

Sounds like he — and you — have been through a lot. Yes, a new infection can make confusion or dementia symptoms worse, either due to the pain or because the illness provokes delirium, and sometimes clinicians choose to sedate people who are very agitated in the hospital. (It is supposed to be done as a last resort, and with the least amount of medication needed, and in the US geriatricians would often choose antipsychotics rather than benzodiazepines.)

Good luck with your efforts to get his medications and management under better control. Try to take care of yourself in at least little ways, as best you can. If nothing else, find an online support group; there is an active one at AgingCare.com.

With my mother’s care, I learned more about CYP2D6 and other CYP450 liver pathways and – unfortunately – became more knowledgeable than pretty much every nurse and most doctors. 2 years before hospice, she broke her hip which is when her poor reactions to all opiods – including extreme agitation – began to show. Tramadol after other falls also landed her in ICU with full allergic shock. Morphine does not always mean comfort, and not all adverse reactions happen in just 15 minutes after a dose. I requested but never got a doctor to sign off on limited genetic testing for this pathway although it is covered by Medicare. It was horrible, and at the end hospice surprised me “it’s all we got so we’re going to give it to her.” It still haunts me.

Oh, so sorry you and your family had such a difficult experience. Sounds like your mother was unusually sensitive or otherwise unable to tolerate opiates. I haven’t seen that happen very often but it’s really too bad that hospice wasn’t better able to modify the care and medication they provided.

If the experience still weighs heavily on you, you may want to consider getting some additional help processing the experience, because when it goes badly it can be quite traumatic for family. Take care.

Hello. My mother, age 84, has been yelling on and off this past year and has always raised her voice most loudly during all of her Frontaltemporal dementia which accelerated after a head trauma 2 1/2 years ago. Now she can’t speak words and yells continuously these past few months. The hospice nurse has evaluated her for pain related possibly to NPH from her history. They have checked her bowels, did an abdominal X-ray, UA, changed lounging chairs, different cushions etc but nothing conclusive for the cause, keeps yelling. Sometimes seems to communicate, other times to just yell. Ativan no longer works so have placed her on Haldol 2mg Q12h and MS (Roxinol) 10mg as needed. Mom is very calm now but mostly sedated. I can no longer speak with her since she falls asleep then awakens for moments at a time and she appears more contractured and yells out in pain when moved. The hospice nurse isn’t open to other forms of medication except antipsychotic heavy hitters but it does keep Mom quiet. I don’t know what is normal practice in this situation but I guess Mom will die in sedated bliss, her eating has decreased as well. I’m tired as a MPOA to always second guess medical intervention ( facilities like to sedate) and don’t know what if anything to do. The hospice nurse says if they lift the Haldol she will start yelling again and the residential home won’t keep her there.
Help or insight would be most appreciated. Thank you

Oh wow, this does sound like a difficult situation. You are right, as medical power of attorney you often do have to spend time advocating for your parent, and it’s often a real factor in the stress and exhaustion that people experience.

Well, I can understand why you’d like for her to be less sedated, although “sedated bliss” does sound better than often hollering. One thing I wonder is whether it’s being mostly driven by pain. Oral morphine usually provides relief for about 4 hours (longer if the person’s kidneys are impaired or shutting down). At the end of life people often have pain around the clock, so it’s often appropriate to provide pain medication that is dosed to cover them most of the time. This means either scheduling Roxanol for every 4 hours, or using a longer-acting pain medication. Hospice should know how to do this. You could talk to them and ask about trying this, and then perhaps they could try reducing the haldol somewhat, and seeing how it goes.

My 69 yr. old mother was diagnosed with dementia almost 2 years ago. She is taking Donepezil and Memantine for the dementia. Unfortunately, she has progressed to getting very agitated and aggressive. Some days he will continuously walk around the house, constantly slamming doors, throwing items or trying to find items to throw, etc. Thankfully, it isn’t every day. We have tried the non-medicine way of redirecting her aggression but nothing works. I reached out to her neurologist to ask her to prescribe either Ativan or Xanex. I asked for those items because I didn’t want to go the antipsychotic route yet. I thought that the benzodiazepines route would be less aggressive and if that didn’t work, we could then try the antipsychotic. I explained this all to the nurse and she said the doctor would be calling me back.

Well, the doctor left me a voicemail and stated she prescribed my mother Seroquel 25 mg. I called back and finally got the doctor. I explained my concerns to the doctor. She stated (kind of rudely) that she will not proscribe benzodiazepines to a dementia patient and I could go ahead and get a second opinion. The problem is, I’ve called around, and of course they need to see my mother in person. That is a challenge because we just found out recently, she does not want to get in the car. She goes off (another reason wanting the medication). Also, her insurance provider is where they house all of their doctors under the same roof and I am afraid tthey will side with her doctor since they are “co-workers.”

I have done a lot or research that I believe from good resources and I really didn’t see anything about benzodiazepines being too negative for dementia patients (until reading your comments) but have read stuff about the antipsychotics. I also wanted to go the benzodiazepines route first since her aggression is sporadic and wanted to use it “as needed”. Seroquel has to be taken daily, correct? Can it be taken “as needed”? I have a call out to the Head of Neurology to discuss my concerns (not that it will help) but any insight you can provide would be greatly appreciated. Thank you so much.

Sorry that you are having such a difficult time with your mother’s symptoms.

Benzodiazepines in dementia are indeed discouraged by geriatricians and most experts. They can cause paradoxical agitation and are more habit-forming, which means there’s a greater risk of provoking withdrawal if they are stopped or reduced.

Antipsychotics have been associated with an increased risk of death in older adults but they are still considered a better choice in many cases, assuming families have been warned of the risks.

Antipsychotics can indeed be used on an as-needed basis. Any oral medication will take some time to kick in (compared to IV). I think what your mother’s doctors are suggesting is reasonable. If she doesn’t tolerate the antipsychotic, then they might be willing to try something else.

I know you have tried non-drug methods, but keep trying, even as you use a medication as needed. Is she getting enough exercise and sunshine? would music therapy help? What activities does she enjoy? these are some of the things to keep thinking about. Good luck!

I am in admiration of your knowledge and willingness to have all of this information out here, I have much respect for what I have read that you have posted and honestly have no further questions because it seems like we all are experiencing the same things in different ways with our aging parents and it’s definitely a challenge and not easy.

My mother turned 80 in October and in January we started to watch a slow decline which has rapidly sped up now that it is June. She is in a nursing facility which is not where we wanted her to be but we do not have the type of finances to put her in something that we would feel could perhaps be more accommodating for her needs as the dementia has progressed.

I read thoroughly everything you posted as well as a lot of comments and read other people’s stories and each story had a bit and piece of what we are experiencing as a family and it is more so myself her daughter who has taken this on. I am in some forms of understanding more about it then perhaps I thought I knew but we wished early on in her life she would have allowed us entry because I feel that she had bipolar disorder early on in life but barred us from that part of her life and would not share and would not allow us to reach out and help her.

Now it 80 it has turned to dementia and I am watching all of the horrible symptoms and we have tried almost every medication that you have listed out there, some of which she became addicted to along the journey so this is where we are and I’m just trying to be understanding and ride out the storm and hope there will be some calm along the way

Thank you for your kind comments regarding the site, and for sharing your story. It sounds like you and your family have been through a rough time. I have no answers or suggestions, other than to say that it is common for families to try so so hard to help an older parent, and yet we still often end up with outcomes that don’t feel good.

This doesn’t mean that your efforts were for nothing, or that they weren’t good enough. Especially if you think your mother had mental health issues earlier in life, there probably wasn’t going to be a way for you to get her the help and the outcomes you would’ve liked for her to have.

You can’t save her or make things better for her, you can only try, as you have done. You are thinking of her, even though she may not be able to show appreciation for this. Take care of yourself and remember that you’ve done a lot, and it’s enough, even though it’s not the outcome we would’ve chosen for her. Hope things get better somehow, and best wishes for what’s left of your journey.

My Mother has Alzheimer’s and has gotten more agitated in the last five months. The doctor, facility and hospital all want to give her the antipsychotic drugs. I find that they seem to make her more agitated, kicking, hitting, etc. She does not sleep well at night either. When giving the antipsychotics she can sleep till 3 pm the next day and is very drugged. The last drug was Seroquel and when she was off it she was more calm and easier to redirect. She has now fallen and fractured C2 in her neck and a few weeks later broke her arm. The cervical collar is a real trigger to agitation. Her agitation can be first thing in the morning and sometimes at bedtime or during the night. She lost her spouse of 70 yrs, 4 months ago, then we moved her to a facility, then another facility closer to family, so she has had a lot of change. We now took her from the facility and plan to move to an Adult Family home but I am concerned with her not having any meds for agitation or to help sleep she might not be successful in the home. Are there any meds you can recommend for someone other than antipsychotics for behavior management? Our doctor wants Seroquel to help sleep and for agitation. Thank you.

I have described the medication possibilities in the article. Assuming they have checked for pain, constipation, etc, then at bedtime, one could try melatonin or trazodone. If an antipsychotic seems absolutely necessary, then we would usually use the smallest dose available; for Seroquel that would be 12.5mg. If she hasn’t done well w Seroquel and doesn’t have any signs of Parkinsonism/Lewy-Body, they could see if she responds better to a different antipsychotic.

As noted in the article, some Alzheimer’s patients seem to do a little better on citalopram, but that does take 4-6 weeks to take effect. Good luck!

Thank you for this very informative article. My 78 year-old male relative has been diagnosed with dementia. He was told following a brain scan that he seems to have suffered a series of mini strokes. This has affected his mood (generally flat affect) or he becomes anxious, frightened, uncooperative, depressed. He has also become neglectful in his personal hygiene, and is socially isolated.

At the same time, he is most often than not quite coherent, and engages in complex dialogue, where he addresses historical and current socio-political events with accuracy and clarity.

His psychiatrist has recently decided to address his depression with Effexor. I am wondering whether this is an appropriate and/or effective drug for someone with this diagnosis, and what the the expected side effects might be? Thank you.

Well, sounds like they think he has some vascular dementia and the symptoms you describe would fit into that as well. This condition is associated with depression but unfortunately, studies so far suggest that it’s usually hard to treat. (Depression in other forms of dementia also tends to not respond well to antidepressants; basically antidepressants seem to be more effective in people who are NOT cognitively impaired.)

If you want to learn more about vascular depression, here is a recent scholarly overview:Vascular depression consensus report – a critical update
Usually first-line therapy for depression in older adults is an SSRI-type medication such as sertraline or citalopram (brand names Zoloft and Celexa, respectively). These tend to have fewer side-effects. A drug such as venlafaxine (brand name Effexor) is often considered “second-line”; it can have more side-effects and it can be more challenging to discontinue. That said, your relative’s doctor may have his reasons for proposing Effexor.

I would recommend asking the doctor to clarify why he’s proposing Effexor in particular. I would also recommend clarifying what the plan is for determining whether the medication is working, and stopping/switching the medication if it’s not. Good luck!

I have really enjoy your web site and as many others are searching for the right combination of drugs for my mother with Alzheimers. We had tried Risperidone and it did not work well so they switched to Seroquel. I feel it has made her more agitated at times and sedated. She recently was in the hospital after a fall and fractured C2 which was very challenging. We had her off antipsychotic prior to the fall and the facility felt she was easier to redirect off the med. During the hospital stay they gave her hallol, then zypresia and then seroquel. She reguired a sitter after starting these drugs. I keep wondering if there is any other meds, I have read about Depakote and Tegretol but our doctor only wants the Seroquel. What are your thoughts? After she left the hospital for the C2 we took her back to her facility and she fell a week later and broke her arm. I then took her home with me. I then found a great adult family home with an experienced caregiver but the first night mom “screamed”, to me she calls out loudly for a family member and then she did not want to get in the bed or eat. They felt they could not take her after one night so she is back with me. She has not been on any antipsychotic meds but doctor wants to start Seroquel again, which seemed to have a paradox effect to me. She has been a dream for me the last 36 hours. I did get her GP to let us give 1/2 of Trazadone at bedtime which has helped her sleep. Her only other dementia meds are the Memantine and Donepezil. Thanks for any advice.

Well, in general it is better for her to be on fewer medications, esp since antipsychotics and mood-stablizers, such as valproate (brand name Depakote) increase the fall risk and she has already had several falls! People with dementia are often more agitated during hospitalization, because it’s an unfamiliar environment plus they may have pain or other problems contributing to delirium and cognitive instability.

Hi Leslie, Thank you for your generous and patient replies. My 83-year-old father has been diagnosed with non-specific dementia and has gone from being a fit and active emeritus professor to someone who sits most of the day, reading the same things over and over. He has always had an explosive temper and been given to frequent temper tantrums so it is difficult to say if this is getting worse, but it is getting harder for my aging mother to cope with the outbursts. I guess we were hoping for a magic potion or ‘happy’ pill to provide some respite, but from reading your article it seems not.

Sorry to hear of your father’s diagnosis, it must be heartbreaking to see him declining.

No, there’s generally no magic potion or happy pill. That said, a thoughtful multi-pronged approach can sometimes help. If feasible, getting him to exercise and otherwise get enough physical and social stimulation might help him be less reactive. The catch with social stimulation will be figuring out what activities (and in what amounts) provide the needed engagement without aggravating, overstimulating, or frustrating him. Many people with dementia enjoy music, some really respond to art therapy or other creative outlets.

You could also try talking to his doctors about whether citalopram might be worth trying.

Otherwise, I would encourage your family to keep thinking about how you can keep this manageable for your aging mother. This is much easier said than done, since many older spouses will initially rebuff their children’s attempts to get help, for a variety of reasons that I won’t go into now. But for some families, getting a paid person in to help on most days ends up making a big difference, since the caregiving spouse can take a few hours off, restore himself/herself a bit, and then have more patience with their spouse during the rest of the time.

It is definitely a process to learn about managing dementia behaviors and then since every person with dementia is different, it can take a while to figure out just what helps them and is feasible to provide. Your parents are lucky to have you trying to learn more, in order to help them.

I do recommend Paula Spencer Scott’s book, and she shares an approach to managing difficult behaviors in a related article:7 behaviors.

Hello. I look after my husband who is 80. He takes Ebixa every day and the doctor prescribed quetiapina.
I have been giving half a tablet at night with success. Over the last ten days he doesn’t want to get out of bed. His appetite is poor and it’s a struggle to get him to drink.
I spoke to my doctor who prescribed haloperidol drops. 6 at night. I don’t know how to administer all of these meds. Can you please help me. My husband is very upset and afraid early evening.

I had to look up Ebixa; looks like that’s the UK brand name of memantine, which is called Namenda in the US.

Quetiapine (brand name Seroquel) is an antipsychotic. All antipsychotics are at least somewhat sedating. As I explain in the article, we would normally use them as a very last resort for managing behaviors, and if the issue was sleep, we’d probably start by trying other approaches.

Haloperidol is also an antipsychotic. Normally we would not start a second antipsychotic while continuing a low dose of the first. You may want to ask the doctor if it’s necessary to use two, because generally it’s better to start by adjusting the dose of the first one. (Or if the person doesn’t tolerate it, switch to a different one.) If you aren’t sure how to administer the medications, I would recommend asking the doctor or a pharmacist. There are also sometimes caregiver education programs that can provide education on practical issues like how to administer medication.

Medications aside, it also sounds you’re concerned because he’s not getting out of bed and eating less over 10 days. For that problem, I would recommend a medical evaluation to check for a new or worsened health problem…there are any number of things that can cause an older person to lose energy or feel unwell. The initial evaluation can be done during an urgent care visit, and usually includes checking the blood count, blood electrolytes, considering a urine check, considering medication side-effects, and otherwise trying to determine if there’s a new problem with infection, heart, lungs, kidneys, brain, etc.

Are you aware of research into Lyrica / Pregabilin for vascular dementia agitation. My mother was given this and it resulted in many side effects.The worst of which were a worsening of her cognitive abilities, greatly increased falls resulting in many injuries including broken vertebra, and head injuries, communication difficulties , worsened vision (she already had low vision due to MD, cataracts and no vision in one eye), itchiness and skin ulcers. She was kept on 150 mg of the medication despite my objection only reducing it to 100mcg after many serious falls. She has recently had another ‘unseen fall’ and now appears unable to walk although the injuries are apparently muscular and yet her doctor wants her to go on morphine for her pain which is present when she gets up or down or turns when transferring from chair to wheelchair or toilet. I have power of attorney but my views are ignored.

Pregabalin is an anti-convulsant, and can be used to treat pain related to nerves. Dizziness and gait disturbances are known side-effects, so it’s quite possible that this medication increased her fall risk.

I am not sure why the health providers have continued to prescribe it over your objections. If you’re the designated power of attorney, then you should have the power to refuse certain treatments. If you feel you are being ignored, I would encourage you to bring this up with the clinicians, and with whomever may be supervising them or employing them, if necessary. It’s possible that they have good reasons for wanting your mother to be on these medications, but if so, they should be able to explain it to you, and they are supposed to be including you and your family’s preferences in the decision-making.

In geriatrics we do sometimes use opiates such as morphine, if we suspect that pain is a significant contributor to agitation. But normally we would only consider this after trying other approaches to managing the person’s pain, we would use the lowest doses possible, and we are also more likely go this route if maintaining comfort and quality of life is a major goal for the person’s medical care. It’s also essential to use laxatives when using opiates, because they are constipating and that’s distressing for the older person and can aggravate behavior.

My 68 year-old mother-in-law was diagnosed with Dementia in August of 2017. It was shocking to us as she had seemed “fine” just a two months earlier. She went from paying her own bills and making her own meals to being unable to toilet without cueing in just a few short weeks. She was hospitalized for very dangerous behavior in August of 2017 (she lived alone in a different state) such as: walking into oncoming traffic, walking while undressed and having delusions. She has had Bipolar Disorder for 45 years but never exhibited these symptoms. We had to put her in a memory care facility that same month as her wandering and constant need for help with ADLs was more than my husband and I could handle with two small children in the home. The hospital put her on an anti-psychotic (Risperidone) and it helped a lot. She was fairly happy and stable and was loved by all in her facility for about 6 months. (She did become completely incontinent–but, otherwise no changes in baseline.) But, in March we took her to a neuropsych specialist to try to determine the type of Dementia and he told her she had Alzheimer’s (We had kept that from her because we were afraid it would trigger her Bipolar Anxiety/Depression.) She obsessively thought about her diagnosis and seemed much more anxious. This same Neuropsych also believed she didn’t need to be on the anti-psychotic so we tried to slowly go off the medication. However, after just reducing the dosage from 1mg to .75 she took a dramatic change for the worse. She cut her wrists (her first suicide attempt) and was just a bundle of anxiety all the time. She forgot my kids names and my name. She also started some strange repetitive behaviors. We put the anti-psychotic back up to 1 mg but it didn’t help at all. Still, the doctors didn’t want to give her anti-anxiety medication. This week she made a second suicide attempt. (She said there was water running down her walls and they wouldn’t make it stop… clearly psychotic.) She is currently hospitalized. Would you give anti-anxiety medication in this scenario? The memory care facility doesn’t want to take her back because of liability reasons without anti-anxiety medications to sedate her. She is so miserable and anxious all the time it just seems cruel not to give her something to sedate her. What anti-anxiety medication would you recommend? She is very healthy other than the Dementia. No issues with walking although her balance is a little off. She will respond to questions but almost never initiates conversation. Ugh. I hate to put her on anti-psychotics and anti-anxiety medications but she is so miserable. The Hospital Dr wants to use a low dose of Valium but her NP wants Ativan. I don’t know which is right. Or, if we should try something else entirely like increasing the anti-psychotic.

Yikes. Well, your mother sounds like a bit of a special case, with her situation sounding much more complicated than what I’d consider “garden variety” difficult dementia behaviors. Actually attempting suicide as a dementia patient strikes me as a bit unusual, but then again she has a past history of what sounds like significant mental illness.

Also she is relatively young for dementia, and I find those people often have either more severe progression of diseases such as Alzheimers, or less typical causes for their dementia symptoms. (Dementia in people over 85 is often due to a whole combination of things going mildly to moderately wrong in the brain, whereas in younger people it’s more likely due to one or two things in particular being very wrong.) For this reason, I think evaluation at a specialized memory center can be especially valuable for people her age.

In terms of her medications: these types of complicated situations are difficult for generalists to manage. Honestly, she would be best served by a geriatric psychiatrist or someone else who has particular experience managing mental illness in aging adults and dementia.

For most cases of dementia agitation, if chemical restraint seemed necessary and a person is already on antipsychotic, I’d probably prefer to try increasing the dose or otherwise working within that class, before adding a benzodiazepine. Antipsychotics are sedating, and also treat frank psychosis symptoms. Plus, it’s just generally better to have fewer different medications. But that’s a general principle, not a specific suggestion. In your mother’s case, it’s possible that her providers have good reasons to suggest a benzodiazepine. Valium is longer acting than Ativan. Generally, when starting something new, something not super long lasting is a more conservative/safe approach to take.

P.S. She is also on Lithium for her Bipolar Disorder. She can’t increase the dose as her blood levels are already a little high for her age (within normal limits for non-geriatric patients.) Anti-Depressants have not been as successful in the past to treat her Bipolar Disorder as Lithium

I guess another type of medication to talk to her doctors about would be other mood-stabilizers, such as the valproate. They have risks, but really all your available medication options will have risks.

Excellent clarifying ethical documentation of “off label” psychotropic “chemical restraint” that is SOP in most NH’s that constitutes lots of complicated systemic historic ignorance about psychiatric pharmaceuticals and “elder abuse” etc. I have POA responsibilities for a 92 year old parent that has intervened many times with attending physicians, NH administrators, and staff regarding psychotropic Rx of her serious “dementia symptoms” greatly exacerbated by minimum dosage of Xanax, Depakote, and recent push to include Prozac I refused, coupled with lots of politicized systemic ignorance about patients rights and entitlements; the economics of promoted unquestioned pharmaceutical dependence; and overworked and underpaid staff etc. A little “critical psychological dialogue” helps. When I talk with my elder, who has no memory, about the “context” of her “symptoms” she knows exactly what I am talking about.

My father is 79 years of age. We have been dealing with dementia behaviors for about 3.5 years now. Unfortunately my dad is getting more verbally aggressive And threatening. We tried the ‘no medication’ route until this past June, when we agreed to citalopram to help with the increasing agitation. However his paranoia and confusion continues to increase. My mom is at her wits and and depressed. We are looking at starting seroquel, to see if that helps. My dad is in great shape still walks a half a mile each day with me, rides a bike and gardens, he is just completely not reality based, seeing people who aren’t there, asking about pets we dont have, and paranoid that people are stealng from him. We are doing our best to keep him at home for as long as possible, but i see my mom deteriorating caring for him, as he is very ornery and combative at times. Is our plan to add an antipsychotic at this point justified? Knowing the risks?

Yikes, this sounds like a tough situation for all involved. I think you are quite right to be concerned for your mother’s welfare and agree that they need to be part of the weighing of pros and cons, as you consider your options for managing your father’s behaviors.

It is not ideal for antipsychotics to be used, but if you’ve tried all the safer options, then it might be reasonable to resort to antipsychotics, especially if that’s key to enabling your father to live at home or otherwise remain in a situation that overall serves him well.

What’s good is that you are doing this as a carefully considered decision. That is generally the best one can hope for: carefully considered decisions made after reviewing available options and being informed of the risks. Especially if your dad is having psychosis symptoms (e.g. delusions, hallucinations), the antipsychotic might help.

Otherwise, I would also encourage your family to look into other ways to relieve your mother’s caregiving strain. Some caregiving spouses are often reluctant to accept help in the home, or send their spouse to a day program, often because their spouse with dementia doesn’t want it. But many people with dementia eventually adapt and do well with the change, and it does help family caregivers sustain their efforts.

Thank you VERY MUCH for your expertise and helpfulness!
My 82 year old mother has dementia and very bad hearing. She’s progressed from IL to AL to memory care in an AL. She is very good with me when I bring her home for a few hours… We generally make lunch, go for a walk, listen to music, and maybe something else like fold laundry, plant herbs, polish silver… She is easy for me to manage 99% of the time. She thinks I’m her sister. I go with the flow. I’m happy if she’s happy. On the other hand, the director of the memory care unit has reported multiple instances of my mother exhibiting aggressiveness. Generally, it’s in response to my mother not getting her way. Either she won’t leave another resident’s room or she wants to do something in the kitchen that is “off limits”. When attempts are made to redirect, she can become physical, kicking a door, scratching a care giver, raising a fist… I’ve tried to give the director insight about my mother to try to help. She, and now the exec dir, say if I don’t get my mother on an antipsychotic drug ASAP to manage her, she will not be able to stay due to the risk of her hurting another resident or staff member. My mother is still quite strong. I’m torn between trying to move her to another community and trying a new drug. I like the staff at this community and it is very close to my home, but the memory care unit is very small and packed with residents who generally sit in one room with the tv on. Up to May, my mother had been drug-free. In May/June we began Gabapentin to try to stabilize her mood and reduce pain in her hip/knee/foot (hammer toe) and in July she began a low dose of Mirtazapine. Neither seem to be reducing aggressive behavior with staff. What do you think is a best next step? I see others and you mentioning Seroquel… Would a low dose of this be a best next solution? Haldol? Seroquel? I’m very distressed over the prospect of moving her and also over “dulling her out” with sedation, but have to find a solution right away before she hurts someone. Thank you, in advance, for your guidance.
Robin

Sorry to hear of this dilemma regarding your mother. That is interesting that she is fairly manageable with you, but difficult at the facility.

It can be hard to know whether they are doing everything possible (or at least everything reasonable) to skillfully redirect your mother’s behavior and otherwise reduce her behaviors. Does she get enough stimulation? enough exercise? enough activity? Honestly, I am not sure how you could determine whether they are doing enough on the behavior management front. You could perhaps see if it’s possible to get a dementia behavior consultant to advise on your mother’s care, but you’d have to find one and perhaps pay out of pocket. You could also consider getting in touch with others who advocate for the rights of residents in facilities for your state, they sometimes have resources that can help you advocate more effectively. For instance, in California we have California Advocates for Nursing Home Reform. Every state also has a long-term care ombudsman. Lastly, you could see if it’s possible to connect with the family members of other residents in the memory unit, they might have ideas on how to assess the quality of care and negotiate with the facility.

In general, there is often a question of whether to be persistent and push the facility staff, versus not be “difficult” (which can offer your family certain advantages).

Re your mother’s pain, gabapentin is a second line anticonvulsant and in studies is mainly effective for neuropathic pain (pain related to nerves). It probably only helps 30-40% of people with such pain. So if pain is aggravating your mother’s behavior — which it might be — it’s possible that she still hasn’t been adequately treated for her pain. Also gabapentin can cause dizziness or sedation at higher doses. So you may want to talk to your mother’s doctor about re-evaluating her pain and trying something else. Most oral options and stronger analgesics do have risks, of course, but it still may be worth trying something at a lower dose, such as a half tablet of Vicodin. You could also ask if something topical might be an option, it depends on what seems to be the location and nature of her pain.

Re trying an antipsychotics, a second generation one such as Seroquel usually has a lower risk of certain side-effects, compared to Haldol. However all antipsychotics do raise the risk of death at least a bit, and increase fall risk.

thank you Leslie for such a resourceful article!
My 70 year old dad in China is diagnosed with AD in early 2015 (symptom may occured a few years before that), he is on exelon minimal dosage daily. his memory loss is mainly short term ones and his cognitive ability is actually not harmed a lot (Dr was surprised). but since 2016 he started to be aggressive to people, paranoid about some old mishap and start to have high sex drive and act aggressively, he would intrerrupt my mom’s sleep for sex, and quoting above mentioned old mishap and accuse her for betrayal. my mom is under great stress and I want to help.

the doctor recommended 2.5mg polanzapine per day. he just started 3 days ago. According to your article, quetiapine is safer, so should we switch? what do you suggest in other ways to help him? he is not on any other medication, blood pressure (90/140), actively training for pingpong, fit, decreased appetite. when he is in good mood, he acts very normal and intelligently.

Sorry to take a long time to reply. So, quetiapine is considered safest if one suspects Lewy-Body dementia (LBD), which is associated with visual hallucinations, REM sleep behavior disorder, parkinsonism (stiffness, tremor), and/or dramatic fluctuations in alertness and cognitive ability. People with LBD are very sensitive to drugs that block dopamine, which most antipsychotics do. Quetiapine blocks it less than the others.

You may want to ask your father’s doctors if they have any reason to suspect Lewy-Body dementia in him. The little bit that you describe sounds like it could be consistent with vascular cognitive impairment +/- Alzheimer’s changes, which is a fairly common combo in older people. (Lewy-Body dementia can also co-exist with either vascular dementia or Alzheimers.)

You can also see how your father has been doing with his olanzapine…if the side-effects have been tolerable so far, then I’m not sure that there’s likely to be much advantage in switching.

Otherwise, some people with dementia do become hypersexual. How to best treat this is not yet well-researched. Generally a reasonable first approach is to start with an SSRI-type antidepressant, such as citalopram or sertraline, because these have decreased libido as a known side-effect and they are generally well-tolerated. Here’s a scholarly review that might be useful for you:Treatment of Inappropriate Sexual Behavior in Dementia

In general, I would recommend that your mother get some time off from being with your father…scheduling someone else to take him walking or exercising regularly is often a great help to spousal caregivers. Also helps to learn strategies for coping with the difficult behaviors. Good luck and take care!

Dear Doctor Kernisan,
My Grandmother was diagnosed with moderate Alzheimer about 9 years ago. We found a daily living system that seemed to keep her disease at bay. She lived her days very happy: She walked twice a day, she helped with tiny easy task(kitchen or folding clothes), she did children’s puzzles & math, practiced writing, & read. we kept her busy to avoid her mind from going into negative thoughts. As her disease progressed she developed a sweeter disposition. we kept her medications limited to Exelon patch, namenda, citalopram & melatonin. The last three years, although she spent her days happy, her evenings were tough. She would wake up in states of hallucinations & panic. Regardless of the challenge we did not use sleeping medications. in severe moments we gave her nyquil. Then about two months ago she had one of those episodes during the day. We broke into our emergency medication Doctor had ordered, Alprazolam. Then about three weeks ago, she started with more frequent uncontrollable daytime attacks. Doctor increased her namenda. Then 10 days ago it went out of control in a continuous state of despair, & severe panik. The Alprazolam was only effective for three days and the Haloperidol for only one day. We never expected to go from good circumstances with Alzheimer to Horrific ones within days. Nothing works. If this was your patient what would you recommend? We understand that any recommendation you provide is simply ideas for us to run past our doctors. We just need ideas. We want her to spend her last days with us and outside of a care facility. Thank You,

Well, as you can perhaps tell from the article, for my own patients I would not choose a benzodiazepine such as alprazolam as the “emergency medication” to use in case of crisis. Usually in geriatrics, if we absolutely have to use a medication for such an acute emergency, it would probably be a small dose of antipsychotic. We would also start by carefully investigating to see if the older person is experiencing pain or some other trigger for the worsened symptoms. For instance, sometimes older adults develop a new compression fracture in their spine.

It is hard to say what you should do at this point. If she has been getting benzodiazepines most days, she may actually start to experience some withdrawals or dependence. I would recommend a careful search for triggers and aggravating factors, treatment of pain and constipation if any, lots of reassurance. Sometimes if the situation is really difficult and the highest priority is keeping the older person at home with family, we do use medication — even antipsychotics sometimes — and we do sometimes have to keep increasing the dose.

If you can find a geriatrician, geriatric psychiatrist, or dementia care expert to help you in person, that would be ideal. Good luck!

My husband has been diagnosed with frontal temporal, vascular and some early onset dementia. He is 67 and now in nursing home. They have from the beginning had difficulty getting care done as he won’t allow them. I have always done his care in the evening. He has been there 9 months. He started becoming weepy andpacing back and forth. More than usual.
He was treated with seraquil but made him more agitative and even with me care was difficult. After arguing with the dr over a month they stopped it.
So they tried risperidone. It worked great for the behavior and compliance but left him with insomnia. I asked if they could give a sleep aide but was told no.
After a week they took him off of it as he wasn’t sleeping and waking up other pts. He was moved to a smaller unit.
He was started on nozinan and is taking 15 mg tid. With 15 mg for break through. He was also started on remeron tid. I just can’t remember the dose. Has not made him more compliant with care. So the took him off the remeron as they felt it wasn’t doing anything and started clonazepam 0.5 bid and now have added valproic acid 250 mg bid. After 5 days I find him more aggressive and verbally billigerant. Cooperation is not much better for the staff, and tonight he hit me when I was doing his evening care.
Any ideas? I have asked them to try the risperidone as he was like a pussy cat. Also on these medications he is weepy one moment angry the next. Yelling and then apologizing the next.
Thank you

Sorry to hear of your situation, it does sound difficult. Unfortunately, it sounds like he’s on lots of medications now, so figuring out how to move forward can be tricky. I cannot suggest anything specific, I would recommend you find a geriatric psychiatrist if possible.

I had to look up Nozinan as it’s not something widely used in the U.S., it is apparently a low-potency antipsychotic of the phenothiazine class. These are quite anticholinergic and are related to anti-nausea drugs. I’m not sure why this drug was chosen but in the US, geriatricians generally try to avoid anticholinergics in people with dementia. There are antipsychotics that are less anticholinergic, risperidone would be less anticholinergic.

I wish you could be my Mom’s Dr.
You are so compassionate! My Mom’s Dr. doesn’t even acknowledge she has dementia or early signs of Alzheimer’s but I know she does, she lives with me. My Mom is very stubborn and I tried to get her evaluated and she got so mad at me and refused to go back to complete the evaluation. That was 3 years ago in the beginning stages. She takes absolutely no drugs for anything! Her sugar,cholesterol, blood pressure is all good! Her only health problem in life was IBS/chones and she is slightly anemic. Amazingly since the memory loss no intestinal problems at all. Although she is stubborn and doesn’t like to doctor, she has always been a nervous person. She does have lichen simplex chonicus on her shins. I have taken her to 2 different dermatologists. She is OCD over this on her legs. Constantly looking at it, touching it, which is the worst thing they say she can do. The last dermatologist or should I say PA suggested giving her a anti anxiety drug and told me to ask her GP about it. He persrcibed Zoloft today. Now I don’t know what to do after reading your article. My Mom is stubborn but I do see signs of anxiety,because she knows her memory is gone,but she’s so sweet. This skin condition is madding, her OCD with it and it is worse at night and wakes her up often. The only thing they can give her for it for any relief is a steroid cream. Which I think she is addicted to that cream. I don’t want her to take unnessary drugs. And one side effect of Zoloft, some are intestinal problems. Also I certainly do not want the Zoloft to worsen the memory issues. I do think she is depressed too. She never wants to leave the house. I ask her every day to go somewhere and she won’t! She will only go to the Dr. and occasionally out with us to meet my brother for dinner. I have been giving her Tylenol PM once in a while, when her legs really act up. Should I stick with that and forget the Zoloft? Another bad thing for me is, I have no formal dementia diagnosis and my Mom can still hold a conversation, but if you asked her what she ate 5 Min. ago she can’t remember. She won’t remember to eat, if I don’t make it for her. She doesn’t want to bath, fights me on that, can’t match her clothes or pick out what to wear. It’s all signs but her Dr. acts like he thinks she’s fine, because she can small talk.

Sorry if your mother’s doctor isn’t acknowledging her cognitive issues, that must be very frustrating. If you’ve noticed she’s forgetful, can no longer pick out clothes, and other changes, then that does sound pretty concerning for dementia. Her not wanting to leave the house could be depression but it could also be apathy, or just the fact that she feels uncomfortable and stressed in unfamiliar situations, that is very common when people develop dementia.

Sertraline (brand name Zoloft) is an SSRI-type antidepressant and it can help with anxiety. You could give it a try for 4-6 weeks and see if it improves things, if not it can usually be tapered and stopped without too much difficulty. Steroid cream does eventually thin the skin and older adults do get thinner skin, you could ask the dermatologist if it’s worth being worried about that. I also wonder if you could keep her from scratching by using moisturizing cream or even an ointment, and perhaps covering up her legs so that she can’t scratch?

Tylenol PM does contain diphenhydramine (brand name Benadryl) which is quite anticholinergic and tends to make thinking worse in older people, so we usually recommend older adults avoid such drugs, especially if they are having memory problems. There are topical antihistamines that you could ask the dermatologist about, if the issue is itchy legs.

Lastly, even if you don’t have a dementia diagnosis and are having difficulty getting one, I would recommend looking for a dementia caregiver support group, either in-person or online (or you can join both). You are going through a lot, and a group can help give you ideas and provide you with emotional support. Good luck!

Thank you for your article. Not many want to deal with the actual truth behind these medications, so it was refreshing to read this.

I care for my 87 y.o. mother diagnosed in 2007. She has been in three care facilities, two psychiatric stays which while in one, she almost died from anaphylactic reaction to drug Rozerem. So I moved her in with me and found a medical doctor to work with me on finding the right solution. (she is highly sensitive to medications and has many allergies).

This is what I know: Zyprexa, trazadone, ambien, rozerem, Depakote caused paradoxical effects. Tolerated Haldol and Risperdal but became very Mean.

So, this is what we now do, which is not recommended, but it is the only thing that has worked to reduce her panic, anxiety, emotional distress daily occurrences: ( I likened it to seeing someone in pain of 10 or more on pain scale)

Her cognition is worsening, delusions present and she is so weak = but it calms her enough to function better and she sleeps through the night now and awakes to toilet once. ( I get up to help her because she is so confused and weak)

I would like to try other med besides the xanax but I feel the doctor is tiring and he keeps telling me to place her somewhere. Placing her is a whole other story, we’ve been there, done that. The last time we had finally found a true caring and knowledgeble facility, but 2 months later they ask us to move her out as she was too disruptive to other residents.

Any help in locating a virtual psychiatric physician would be appreciated as well.

Thank you for sharing your story. Sounds like you and your mother have been through a lot.

It’s true that generally in geriatrics we don’t recommend a benzodiazepine such as Xanax, since benzos have many risks and often make confusion worse. That said, in the end one has to consider an individual’s situation and medical history, and in some cases, the benefits of using a benzo seem to outweigh the problems and risks. In particular, if a benzo is part of the formula that keeps an older person quieter at night and this allows a family to keep the person at home…that is a big benefit, because as you note, it’s not easy to find a good facility and transition an older person with dementia and difficult behaviors.

I don’t know of any virtual psychiatrists, you would have to search online to see if anyone is offering such a service in your state. Telemedicine is allowed in most states, but usually the clinician has to be licensed to practice in the state where the patient is located. Good luck!

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